Musings on Mesothelioma

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Monthly Archives: March 2016

“I got a girl named Bony Moronie. She’s as skinny as a stick of macaroni!”

“Bony Moronie” by Larry Williams was my theme song while I was sick. My partner introduced me to the great little ditty and it became my go-to song to lift my spirits. I’ve always weighed between 115 and 120 pounds. I’ve never been Bony Moronie “skinny” per se – I have the stocky farmer limbs of my Irish ancestors – but I’ve always been slim. By the time I went into surgery for my Mesothelioma, anxiety (and cancer), had caused me to start to lose weight and I was down to 110. After the grueling surgery I was fed only ice chips for ten days. ICE CHIPS people, nothing else.

One day my nurse announced cheerily that she was going to weigh me. Suddenly I found myself standing precariously on the scale, hunched over like a frail old lady. “90 pounds!” cried the nurse, with a touch of theatrical flair. Ninety Pounds. OMG. What normal 47 year-woman weighs 90 pounds?! The number horrified me. At that time I had not yet viewed myself in a full-length mirror, I had only seen my face in my makeup compact. I was not emotionally prepared for how shocking my appearance truly was.

It wasn’t until January 2015 when I saw myself naked in a large mirror. I was at the rehab hospital and tipping the scales at 96 pounds. I remember the moment I saw my whole figure for the first time, I had sort of an out of body experience. I looked at the pale, stringy haired, emaciated woman in the mirror and wondered who she was. It was very difficult and painful to accept that I was looking at my own reflection. From that moment on I mostly tried to avoid looking at myself, for I feared that I would spiral down into the depths of despair and not be able to climb back out.

One of the things that drives me bat-sh*t crazy is the expectation by many people that because I am “lucky to be alive,” I somehow don’t have the right – or it’s deemed in poor taste – for me to talk about how bad I feel about my body. As cancer survivors we are allowed to feel both tremendous gratitude for the second chance at life and simultaneously feel deep pain about the ravaging of our physical selves.

In the late summer of 2014 I started having panic attacks. It was as if my psyche knew that something was very wrong before I actually found out that I had cancer. My anxiety was making it hard for me to eat and I was starting to lose weight (of course the cancer was also causing me to lose weight but I didn’t know that at the time). Fast forward to the Fall when I was diagnosed with Malignant Peritoneal Mesothelioma, my anxiety levels went off the charts. So one of my dear friends, whom I have known since our University of Toronto days, made me Pot Chocolate Chip cookies to calm my nerves. Like many things in life, it seemed like a good idea at the time…

One night, after not being able to eat more than a few forkfuls of dinner, I took a small bite of one of her cookies. It tasted horrific and I worried that perhaps I was going to be accidentally poisoned. I didn’t feel anything right away and like a complete idiot I took another bite. Big Mistake. Next thing I remember I was organizing the bathroom. I became enthralled with the toothbrush holder and spent a long time placing it “just so” on the counter. Then I became obsessed with my face, staring at myself in the mirror, admiring my small pores. But then there was a shift and all of a sudden I was on a BAD trip!

I ended up at the local hospital, where they already knew me well from my various panic attack freak-outs. At the front desk the nurse asked me why I was there. I said “because I have cancer and I ate a pot cookie and now I am having a very bad and scary trip.” She motioned me to the waiting room where my dad sat with me – bless his heart – until my partner arrived. I sat low in my seat, trying to hide from the others whom I deemed all highly suspicious. Once my partner arrived I was interviewed by another nurse. I told my story and then I threw up in a small bowl that magically appeared before me. I was very scared. I was like the lamest drug taker in the history of drug taking. The nurse put me on a gurney in the waiting room so that I could “come down” while my partner stood next to me listening to my gibberish (he’s a saint). Unfortunately it was a busy night at the hospital and I live in a big city – Toronto. So very quickly the hospital waiting room filled up with characters right out of a Law & Order episode. Next thing I knew I was lying in my gurney next to two crazy broads who were each shackled to their gurneys. There was also a gaggle of police officers. Why oh why did I eat that second bite of the cookie?! I was also in a panic because I couldn’t remember if I had properly disposed of the rancid cookie. I was paranoid that my dog Leroy would eat it – though looking back now I realize that the cookie smelled so disgusting that Leroy would have – unlike me – just said no.

Moral of the story: take one bite and wait, wait a long time. Or, better yet, ask your doctor for some medicinal pot.

If one more freaking person tells me that juicing will prevent my terminal cancer from returning, I will strangle them. Or, at the very least, I will de-friend them on Facebook. Believe me, I know all about juicing – I lived in Los Angeles for twelve years! And it’s not like I’m sitting around all day eating Doritos and drinking Orange Crush! I eat a balanced diet, but I also include one daily treat – like a couple of cookies or a bowl of ice cream. I inherited my sweet tooth from my paternal Grandmother who used to hide chocolate bars all over her house! If anything, I am more aware than others about the importance of diet because I have an ileostomy. With ileostomies, and mine is a “high-output” one, food (or juice!) goes right through you. So I am very aware of getting enough calories and nutrients to keep my immune system strong. I have managed to get myself back up to 115 pounds – from a low of 90 pounds! – so I clearly know what I’m doing. I understand that people just want to help and that often they don’t know what to say and I truly appreciate everyone’s concern. But please, enough with the Juicing.

It was six thirty AM, time for Sharon to start getting ready. She liked to look good for her surgical oncologist’s morning visits. She asked her nurse for a bowl of water and washcloth. Later in the day she would get a proper bath, well, as proper as you could get while lying in bed. But for now she just wanted to wash away last night’s grime. She washed her face, neck and armpits. She followed up with a moisturizing wipe, the kind used to take makeup off, it left her face with an attractive glow she thought. Then she brushed her teeth, using a styrofoam cup as her sink. As soon as she finished, a strong wave of nausea overcame her. Fuckety fuck fuck she muttered. She rode the wave for a few minutes – “nausea surfing” she called it – then thankfully it passed.

She propped up her travel mirror on the table next to her hospital bed. Looking in the mirror her first instinct was always to burst into tears. Her face was pale and scarily thin, she looked like a refugee from some godforsaken country. She had lost twenty-five pounds and her hair was falling out, shedding like a dog all over her pillow. But her daily beauty ritual of “putting on her face” as her grandmother used to say, (may she rest in peace), was essential to Sharon’s emotional survival. It gave her a sense of normalcy and the tiniest feeling of still having some control over her life and body. She applied blush to the deflated apples of her cheeks, plucked a few stray hairs, then added a tinted lip balm. Obviously she didn’t do a full red carpet look, if for no other reason than she didn’t have the energy. She finished primping by putting on scentless hand lotion and wrapping her bright pink Pashmina over her bony chest.

Feeling completely exhausted from the effort she lay back down, but then noticed that her overnight drainage bag was full of urine. Worried that it might overflow, she buzzed her nurse. A different nurse appeared this time. “You’re going to have to start urinating on your own, you’ve had this catheter in for too long, ” the nurse said with a bossy edge to her voice. “My bladder nerves were damaged during surgery, they’re taking awhile to bounce back.” Sharon said, trying not to reveal any emotion. The nurse gave her a chastising look, her expression suggesting that it was somehow Sharon’s fault that she wasn’t able to urinate. Dear God, where was her sweet nurse?

Ten minutes later her surgeon and his team of oncology residents were staring down at her. They always seemed very tall to her. It felt like being surrounded by tall, large headed aliens who were staring down at their human specimen restrained on a metal table. A very handsome resident, Dr. Josh Doukas, pulled her gown aside and inspected her ten inch long abdominal scar. “Looking good, looking good,” he said. She felt humiliated. Her sad little tummy, all mangled and grotesque. Why did Josh have to be so good-looking? “Now let’s take a look at your stoma, how has your output been?” If there is one thing a girl does not want to be asked by a handsome medical resident, it’s “how is the fecal waste matter that is flowing out of the red intestinal stump on your stomach?” Sharon wanted to disappear. Instead she smiled and patted the hideous bag affixed to her belly, the one that was collecting her waste. “It’s working well, though I’m still only eating soft foods.” The surgeon and his team continued to ask her questions and discuss her case amongst themselves. Sharon was a bit of a Cancer Celebrity, in that she had a very rare type of terminal cancer. The doctors, though they made a decent effort to hide it, were actually quite excited to have her as a patient – she was a fascinating case.

After lunch the physiotherapist and her assistant came by to help bring Sharon on a walk. They were both plain looking, lovely young women. Makeup free, hair pulled back in ponytails. The types who wore Patagonia jackets and comfortable European made shoes. Along with Sharon’s bladder, there had also been damage done to the nerves in her left leg. Apparently it had something to do with being splayed out on the operating table for twelve hours. So much to Sharon’s surprise, when she had awoken from surgery she’d found that she couldn’t walk, one leg was fucked up. The three of them walked slowly, Sharon’s urine bag attached to the walker, her giant splinted leg awkwardly inching forward and brutal pain shooting out from her incision area. She had once read about doctors who performed “vaginal tightening surgery” and for a moment Sharon wondered if her surgeon had tightened her tummy while stitching her up. The pain was enough to bring on another wave of nausea. She bent her head into the little plastic barf bowl that the assistant always brought on their walks and threw up a little clear liquid.

Sharon succeeded in making it across her room and halfway down the long corridor. This was considered a victory and for her prize she was offered a pain killer drip and some frozen yogurt. Sharon passed on the yogurt, but was excited about the painkiller drip. Maybe this is what it felt like to be a heroin addict – you looked forward to it, it was the highlight of your day. What if she became a drug addict? Then again she thought, who cares? I’m already dying, so why the hell not? She laughed to herself as the drug hit her body. She felt warm and cozy and happy. The sweet nurse – Louise was her name – stopped in and put a couple of pillows under Sharon’s legs so that they were angled upwards. “Sleep well Darlin,” she whispered to her.

You know you have Mesothelioma when having a brain aneurysm is low on your list of things to worry about. LOL.

Last week I totally forgot that I had a brain scan scheduled to see if my aneurysm had grown. My brain aneurysm was discovered accidentally while I was in the hospital last year being treated for Peritoneal Mesothelioma. At the time, I remember my Oncologist coming over to my bedside and saying “okay, this is going to sound worse than it is, but you have a brain aneurysm.” I actually laughed, because what else could I do? It seemed completely insane.

I am lucky enough to be seeing one of Toronto’s top Neurologists who also happens to be super Euro-Chic and wears the most gorgeous Italian loafers. In his lovely accent nothing sounds too scary. If we find out that the aneurysm has grown, then I will have to get a procedure called “coiling,” which for some reason makes me think of 80’s permed hair. Although it’s ridiculous, I like the idea that the doctor who will be putting metal coils in my brain is a sharp dresser. Platinum please.

Like this:

After having two surgeries and the trendy “shake & bake,” (aka HIPEC), to treat my Peritoneal Mesothelioma, I was put on some serious drugs. I was out of my mind and delusional. I was SO high that although I was hooked up to a gaggle of tubes, I was determined to escape from the ICU. LOL! I had decided that I hated my entire medical team and that I was more than ready to leave the hospital to recuperate at home. So I asked my partner to retrieve my belongings for me & bless his heart he did. “Where are my skinny jeans?! I don’t see them!” I cried like the lunatic I was at that moment, as I weakly rifled through my bag. I eventually found everything I needed and then lay back in bed, satisfied that I had my outfit ready for my upcoming great escape.

Shortly thereafter, unbeknownst to me, I was restrained to my bed with some soft canvas ties. I didn’t understand what they were, but I didn’t like them, so I tried hiding them under my sheets – even in my hot mess state I still had a sense of style and I thought the ties were hideously ugly! Later that day I was lucky enough to get my own private nurse! I felt like a movie star! She sat next to me and when I asked her she told me all about her family and showed me photos on her phone. She even braided my hair!

I loved having my own nurse, everyone should have this luxury I decided. What I didn’t realize was that the lovely nurse was actually my “minder,” – she was there to make sure that I didn’t try to pull out my tubes and escape. Again, LOL. Needless to say my plans were thwarted. After what seemed like an eternity I graduated to a room in the Step-Down unit. That at least felt like an accomplishment, though not as satisfying as had I actually escaped!